"The 'Indi Gregory Case' encompasses various levels of reflection (medical, ethical, legal, and political) that are interconnected but often confused in media debates. The philosopher of science and bioethicist Giovanni Boniolo analyzes them through a series of questions, the answers to which may also help us in similar cases that may arise in the future. Image: Twilight, by Dilma Freddi.
There has been, and continues to be, much talk about the "Indi Gregory Case." Indi was an eight-month-old baby suffering from a severe, and so far fatal, rare disease. More specifically, Indi was affected by D,L-2-hydroxyglutaric aciduria: a genetic disease with autosomal recessive inheritance caused by defects in the SLC25A1 gene. This means that Indi had inherited two copies of the mutated gene from her parents, both of whom were healthy carriers. There was a 25% chance of being in this situation, a 50% chance of being a healthy carrier, and a 25% chance of not having any copy of the mutated gene and therefore being completely healthy.
The pain and sorrow of the parents must be incredible, as all parents who have had a child with a serious pathology know. Perhaps this should entail some respect from politicians, particularly Italian ones, or from ordinary men and women who, in the name of their vision of life and death, propose solutions based on incomplete medical information or on untrue news, or judge based on their own beliefs, as if these were the beliefs of all or as if everyone should adopt them.
For this reason, it is not my intention to say what should have been done or how the actions of Indi's parents or other actors in this story should be judged. Instead, I would like to bring reflection to the different levels at play and pose questions that, individually and collectively, could be considered, starting from the idea that one cannot arrogantly take sides for an ethical-existential choice that may not be for everyone unless one wants to fall into forms of moral paternalism, i.e., thinking that one's moral vision about living and dying is better than others and therefore it is right that it be imposed.
There is the medical level. On this, everyone should agree, regardless of those who hold anti-scientific positions: Indi's disease had no chance of being cured with the medical knowledge currently available. Medicine could only take care of the baby with all available means, such as palliative care and end-of-life care (which are two different things), avoiding any form of therapeutic obstinacy, which no doctor at Queen's Medical Centre in Nottingham, where the baby was, advocated.
There is the ethical-existential level. On one hand, there were the doctors at the Nottingham hospital who believed that it was morally commendable, at a certain point in the pathological course, to decide to stop mechanical support and let Indi leave us, avoiding, with end-of-life care, her suffering. This, of course, is not euthanasia! And only those who want to muddy the waters, for ends other than the political or ideological speculation of pain, think or shout this. On the other hand, there were the parents who believed it was morally commendable to continue to keep Indi alive with mechanical supports also based on their assertion that they were thus defending Indi's rights.
There is the local legal level connected to the decision of the English court to support the medical decision and to stop mechanical support.
There is the level of the medical decision, strongly consequent to a particular vision of life and death, of the Bambino Gesù Pediatric Hospital which declared itself ready to welcome Indi.
There is the transnational legal-political level on which the Meloni government operated, supporting the request of the Italian hospital and, to facilitate the possible transfer of Indi, on the one hand, granted her Italian citizenship and, on the other, sent a formal appeal, later rejected, to the English Minister of Justice and Lord Chancellor to intervene in favor of this possibility.
All these levels have, however, often been confused in the media debate, when each of them, despite their evident interconnection, deserves to be analyzed. Let's try to do so only by posing questions whose answers, perhaps, will allow us to reflect on similar cases that may occur in the future.
Being D,L-2-hydroxyglutaric aciduria a genetic disease with autosomal recessive inheritance, did Indi's parents know or not that they were healthy carriers of the mutated gene and therefore that they had a 25% chance of having children with this pathology? This is a very important question when dealing with recessive diseases because knowledge of the result of genetic tests could lead to different and more informed reproductive choices, as has already happened in Italy.
At the level of ethical-existential choices, did Indi's parents really think they were fighting for her rights or were they rather fighting for their own ethical-existential vision of life and death that they were applying to their daughter? Were they fully aware of the ethical values and beliefs they carried? Were their choices not disputable or could they be reconsidered in the light of help given by experts in ethical consulting in the clinical field?
What could the doctors of the Bambino Gesù Pediatric Hospital do that the doctors of Queen's Medical Centre could not do? Was their expertise in treating D,L-2-hydroxyglutaric aciduria really so advanced compared to the standards of the Nottingham hospital? Were the doctors of Queen's Medical Centre really so "barbaric" as to "pull the plug" and nothing else, without initiating end-of-life care? Are there more specialized centers in the world for experimental gene therapies that could be implemented? Why at the Bambino Gesù Pediatric Hospital and not at Boston Childrens' Hospital? Perhaps because the doctors of the former had an ethical-existential vision of life and death that was different from that of the doctors of Queen's Medical Centre and closer to that of the parents? But do you look for a hospital to be treated (and if necessary cured) because in it you recognize there to be the best medical knowledge in that sector or because you think that those who work there share the same ethical-existential vision on living and dying?
Why did Italian politics intervene? Is it the role of politics to intervene in individual ethical-existential decisions only on the basis of the belief in how to live and die of those who govern at the time? Is it morally commendable to offer parents from another country, whose level of medical-health competence is certainly not inferior to the Italian one, but who are devastated by pain and psychologically fragile, the possibility of proceeding as they would like, even implying that in our country there are better treatments or that one can die better?
And what about our politicians who are concerned about incurable rare genetic diseases for reasons not always clear and who do not do enough for genetic diseases that are curable? For example, the Extended Neonatal Screening (SNE) would allow the recognition at birth of serious diseases that can be treated or better controlled. Why are the same politicians who dealt with the Indi case not so active, for example, for spinal muscular atrophy, which is treatable today, but with only 8 regions having included it in the SNE. Is it morally commendable or reprehensible this concern for D,L-2-hydroxyglutaric aciduria which is incurable and rare (affecting about 1 newborn in 1,000,000) and not for spinal muscular atrophy which is treatable and less rare (affecting about 1 newborn in 10,000)?
Does a court, like the English one, always have the right to remove from parents the ability to decide what is best for their daughter in terms of life and death? Do parents always have the right to decide what is best for their daughter in terms of life and death, recalling the case of Francesco and the case of Eleonora? Do parents have the right to choose the hospital, whether in their country or a foreign one, where they think their daughter can receive better treatments?
We should not take sides, like fans, for one ethical-existential choice against another. We should not apply a supposed moral common sense in such complex cases without an in-depth knowledge of the medical point of view and the broader biography of the parents, and without considering whether entering the fray without the correct ethical competencies might increase the confusion and emotional and decisional stress of the main decision-makers (in this case, the parents and the doctors who have followed Indi).
Are there lessons we could take from the Indi Case? I don't know. Perhaps only that of accepting that there are different ethical-existential views on living and dying and that none are wrong as none are right, but that speculating by siding with one or the other for political purposes, for matters of personal visibility, or for the sheer pleasure of being able to say “I too want to have my say, after all, we are in a democracy” is wrong. And it is wrong precisely from an ethical-existential point of view.